Early-Onset Dementia: A Caregiver's Guide

Dementia makes it difficult to think clearly, to remember things, and to communicate with others. Early-onset, or young-onset, dementia refers to changes that begin before age 65. It can start as early as age 30 but usually happens around age 50.

Because it starts at an earlier age, there are unique challenges to consider when caring for someone with early-onset dementia, such as Alzheimer's.

People with early-onset dementia are more likely to have:

  • Children who depend on them
  • A job when diagnosed
  • A home mortgage and other big financial commitments, such as college loans

Because of this, they need special support in some key areas. As a caregiver, you'll need to pay close attention to the person's family life, job situation, and financial and legal needs.

Your loved one also may have mood swings and changes in behavior and personality. All these can affect family, social, and work activities.

Everyday Tasks

You'll need to be there for your loved one when he isn't able to manage his own general health needs and daily activities. Your loved one might need your help to:

  • Remember people's names or faces and important places
  • Remember appointments
  • Get to doctor's appointments, school meetings, and other events
  • Take medications
  • Dress, bathe, brush his teeth, and take care of other hygiene needs
  • Plan healthy meals
  • Manage finances

And here are some general things to keep in mind:

  • Always think about safety first. Before allowing your loved one to do something alone, check the surroundings and situations for anything that could cause injury or harm.
  • Think about stressors. Figure out which things cause the most frustration, and offer extra help with planning. If grocery shopping is stressful, it may help to create a weekly shopping list together. Don't forget to provide plenty of support and encouragement.
  • Assume she can do it. Don't think that having dementia makes a person unable to do a task. See if she can safely do it first. If not, help her out.
  • Create a cue for help. Establish a phrase or signal that your loved one can remember and use to let you know when she really wants your help.
  • Set up regular check-ins to see if what you are doing to help is actually still helping. It's a good idea to discuss any new frustrations and how you can offer support.

 

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Legal Issues

As soon as the person you're caring for is diagnosed with early-onset dementia, the two of you should meet with an attorney to create a Power of Attorney (POA). This document gives you -- or whomever your loved one designates -- the right to make financial, property, and personal care decisions for the person with dementia.

An attorney can also help your loved one create a will and other important legal documents.

Family

The person you're caring for may have young children at home when diagnosed with early-onset dementia. This can make caregiving challenging because the children will have a wide range of emotions about their parent's condition.

Young children may feel scared or worried that Mommy or Daddy can't remember things. Teens may have similar feelings and may be anxious about taking on added responsibilities.

Talk honestly with all family members, including kids, about the disease and what to expect. Make sure to tell each person in an age-appropriate manner. The facts may be upsetting at first, but children are often relieved to find out what's caused a parent's change in behavior.

Work

The decline in memory and thinking skills that happens with dementia can have a big effect on a person's ability to work. According to the Alzheimer's Association, people with early-onset dementia are commonly let go from jobs.

Any kind of job loss is tough on a family's finances, but when it's combined with a severe, costly illness, unemployment can be especially hard.

As a caregiver, you can do some things to help:

  • Ask your loved one's employer if early retirement is an option.
  • Determine if employee assistance programs are available and, if so, what they offer.
  • Review the company's benefits to see if your loved one qualifies for paid time off or continued health insurance if she resigns.

Specifically, you should ask about these benefits:

  • Family and Medical Leave Act (FMLA): Under this law, a person is allowed to take up to 12 weeks of unpaid leave every year for medical and family reasons. There are different eligibility requirements.
  • Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA): This federal law lets certain people keep their health insurance coverage for 18, 29, or 36 months after leaving a job. Talk to your health insurer to see how long your loved one may be covered.

 

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Finances

Eventually, early-onset dementia symptoms force a person to stop working. If you're the spouse or partner, you also may have to quit or cut back your work hours to provide care. This can be a financially tough time on your family, particularly when there's a mortgage to pay or a child to send to college.

Here are some steps to take:

  • Talk to your loved one early about the family's financial needs and what can be done to meet them. Discuss ways to limit excess spending.
  • Meet with a financial planner and accountant to find other sources of income and tax deductions.
  • Contact any retirement plans to see if you can get the funds before age 65. Some will let you, especially if there's a medical reason.

You also should check for government benefits. Specifically, ask about:

  • Disability insurance: Early-onset Alzheimer's disease is recognized by the Social Security Administration, so your loved one may be eligible for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
  • Medicare: This federal health insurance program helps pay for some doctor's fees, medical items, outpatient prescription drugs, and all inpatient hospital care. It's for people over 65 who get Social Security retirement benefits. However, those with early-onset Alzheimer's are eligible after they get SSDI for at least 24 months. It also provides some short-term home health care in some cases.

 

Take Care of Yourself

Your help is really important to your loved one's quality of life. But it's a lot to take on. You'll probably feel anxious, depressed, and even angry sometimes. A person with dementia often needs long hours of care and a lot of monitoring, which can make you feel exhausted and overwhelmed. It's OK to feel this way. Many caregivers do.

Don't forget to take care of yourself. Here are some tips to relieve your stress:

  • Be realistic. Accept that you can't do it all alone and that it's OK to ask for help or say yes when someone offers. It's also fine to say no.
  • Don't quit your job until your loved one has a definitive diagnosis and you've fully explored any employee benefits. This helps keep income flowing and relieves stress about lack of funds, at least temporarily. Talk to your boss about flex options, like telecommuting.
  • Stay informed. Learn all you can about early-onset dementia and how it can affect your family's life. You'll be better prepared for future changes.
  • Talk to others. Get support from family and close friends. Don't keep your feelings bottled up inside. Sharing your emotions and journey can be helpful. Caregiver support groups are available and may be a safe place for you to discuss your feelings and unwind.
  • Walk it off. Exercise is a great stress reliever. It will help you sleep better, think better, and have more energy.

 

WebMD Medical Reference Reviewed by Neil Lava, MD on August 09, 2016

Sources

SOURCES:

Alzheimer's Association: "Early-Stage Caregiving," "i have younger-onset alzheimer's disease."  

Brodaty, H. Dialogues in Clinical Neuroscience, June 2009.

Family Caregiver Alliance: "Caregiver's Guide to Understanding Dementia Behaviors," "The Stresses of Caregiving," "Taking Care of YOU: Self-Care for Family Caregivers."

National Institute on Aging: "Early-Onset Alzheimers."

National Institute for the Care of the Elderly: "Early Onset Dementia: Advice for Caregivers."

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